Wednesday, July 02, 2014
by Mark Beckwith
I'm writing the morning of the start of the 9th Nevus Outeach Conference. In ways, it's very much like past conference times, in other ways it's not. Some of my inspiration is missing, but I can only blame myself for that. Also I have been distracted. There is so much to do still. There is not really a conference chair this time, because we opted to do things in a different way. We won't know absolutely for sure if it was the right decision until the dust settles. That's a little scary. It feels like I have stepped onto a luge and am careening out of control, down an icy slope, all the while picking up speed.
But we think it's going to be a great conference!
So I got a look at the weather report, and, although for some unknown reason my computer is reporting the temperature in °C, a cruel joke, chance appears to be on our side this week. Nothing over, well, 95°F, and partly cloudy each day through the end of the week. That may make us want to move the Dads' session out to La Terraza in the shade of the afternoon.
We have a great slate of selfless speakers, who by the measure of their willingness to share their renowned expertise with a lay audience over a holiday weekend, are some of our biggest champions. But of course there is so much more to measure them by, too. We ask a lot. They give a lot. We need a lot. A hearty "Thank You" to all of them before we even get started!
The heart of the meeting is in all the patients and their families who come to Texas to attend. This year it's 327 people from 14 countries. 103 people with nevi. We think that's pretty impressive for a rare and orphan disease. There was a time when a person with a large nevus would most likely live their entire life without meeting another. Nowadays, you have to be living under a rock for that to happen. We like to think we helped that along. That's why we call our conferences "a family reunion for the family you never knew you had."